With EoE, Allergies, Asthma and a G-Tube

The evening I had posted my last post, about finding a new church, I received an unexpected phone call. It was someone from the church. It was a very important person from the church, the Pastor’s wife and children’s ministry director. Completely caught me off guard. Through the grapevine she had heard about my post and read it. She felt it in her heart to call me right then. Let me tell you, I really felt grateful for that phone call.

She didn’t need to call me.

She could have ignored the whole situation.

She wanted to know our story and wanted to help. They wanted to make their church a safe place for my kids.

As you know, I am a HUGE advocate for my kids. However, I’m not one to walk into someplace new and say hey you need to change this and this just for us. So I did feel a bit awkward explaining what my kids can and can’t be around. When we were finished talking I felt so much love, hope and excitement that they wanted us to come back. More importantly they wanted it to be safe for us. They really wanted us to give them another chance. I knew in my heart that it was the right thing to do. The very next Sunday we went and this is what I saw. As a matter of fact there is now no food allowed in the room Tinleigh is in. I could have cried. They didn’t need to go out of their way to make changes for us, but they did. That’s just HUGE! We’re just some little allergy family trying to find a new church home.

A number of times during the week the Pastor’s wife and I messaged about things that are okay and things that are off limits. I would smile every time I saw a message from her. Warmed my heart. I am enjoying sharing my knowledge that may help them to keep another allergy child safe in the future. I even had another mom that attends the church reach out to me who’s son also has a feeding tube. It’s nice to make those types of connections with people who know a little about what life maybe like for you.

I spoke with a number of people in charge of different positions at the church when we were there on Sunday. They all knew of our situation and all wanted to help us feel comfortable. They did. I felt so at ease and also excited, because I had helped a whole new house understand our allergies and how to help keep my kids safe.

I have learned a huge lesson through this, the hard way.

I’ve learned that I can’t just say she’s allergic to everything. That’s way to vague and leaves everyone wide open for disaster.

I’ve learned Tinleigh is VERY allergic to wheat. Those small reactions I’ve seen while she plays with play-dough could end up very bad. Wheat will probably be a food she never gets to eat again. I’ve also learned that a food she once wasn’t allergic to can become a huge allergen for her. Probably holds true for Gage and Charlie as well. SCARY.

I’ve learned that it’s okay to say “Hey, while we’re visiting today would you mind making a few changes?” People do want to help, they do want to keep my kids safe. I’m not being out of line by asking. If they don’t try to accommodate, then we’re probably in the wrong place.

I’ve learned there are still many people out there that want to help and do care.

Please pray for Gage and Tinleigh this Thursday. We will be making a trip to see the GI doctor and they will be getting scoped to see if we have things under control enough to move forward with food trials. Gage had to remove sweet potatoes and broccoli. We also started him on a medication for reflux. His last scope numbers were as bad as right before he got his feeding tube. If he’s not better this time then we have a big problem and his disease is out of control again, which will mean we have to start removing foods we thought were safe. Tinleigh got to keep sweet potatoes and oranges. She also started a medication for reflux. If her biopsies are bad then she looses sweet potatoes and oranges. This is one of those huge scopes that I am so worked up about. My nerves are about shot. I worry so much about how it will effect them, especially Gage, mentally. He wants to move forward SO BAD. EoE sucks, we hate it. Please pray for a cure.

1 – When you say your child is allergic to everything, has a feeding tube, can only eat 4 foods and is anaphylactic to dairy, they don’t quite grasp what that means.

2 – Tinleigh is definitely allergic to wheat.

3 – Being scared of finding a new church is going to be as scary and hard as I imagined.

I dropped off each of the kids in their age appropriate room at church this morning before heading up to the sanctuary. I made sure the room was food free or that they were having a “safe enough” snack that they could be in the room with it. I felt good about drop off and the kids were so excited.

One of the first things I did when I got to the sanctuary was said a little prayer that God would watch over the kids and keep them safe this morning. Service ran long as it may at times. My phone never lit up with a message that I was needed and I assumed all was well. I picked the boys up first, they had a GREAT time. The boys then opted to get Layton next. She squealed with delight when she saw us. She had so much fun in her little room. Then we went to get Tinleigh. As I looked into the room and caught a glimpse of her face it looked swollen to me. I just stood there in the doorway staring at her trying to figure out if it was my eyes or if her face was swollen. I finally stepped into the room and got a good look at her. My heart sank.

Poor Tinleigh had three good size hives along with a ton of little ones all over her face. The teacher was helping her find something. Then she pulled the something out. She explained to me they made bread with flour and oil today. Dairy free she said. I felt horrible. I let Tinleigh down. I didn’t explain to the teacher the extent of things. The teacher obviously has no clue about allergies. The hives were VERY visible on her little face yet no one came to get me. I really wanted to cry, I felt horrible.

So today I want you to share this post and I want to spread the word of what an allergic reaction can look like. Also, please take it seriously when someone says they’re allergic to something. They could die.

What can happen during an allergic reaction? What does an allergic reaction look like?

Hives and swelling – these can be like you see on Tinleigh above. Red welts, itchy patches of skin that appear out of no where.

An itchy mouth. You may see someone pushing their tongue around inside their mouth trying to itch it.

Cough

Nausea or vomiting

Diahrrhea

Stomach pain

Runny nose

Sneezing

Itchy ears

Lips, tongue and/or throat may begin to swell

Trouble swallowing

Shortness of breath or wheezing

Turning blue

Feeling faint, confused, weak or passing out

Loss of consciousness

Chest pain

Weak pulse

Sense of “impending doom”

How a child may describe a reaction.
“This food is too spicy”
“My tongue is hot or burning”
“It feels like somethings poking my tongue”
“My tongue or mouth is tingling”
“My tongue itches”
“It feels like there is a hair on my tongue”
“My mouth feels funny”
“There’s a frog in my throat”
“There’s something stuck in my throat”
“My tongue feels full or heavy”
“My lips feel tight”
“It feels like there are bugs in there” (inside the ear)
“My throat feels thick”
“It feels like a bump is on the back of my tongue or throat”
Source FARE

Source FARE

Please share and please be aware. What if your child has a friend over with allergies? Would you know what to do? Would you know what is safe? Would you be able to spot an allergic reaction? Would you know to give Benadryl or epi pen? You can find a great emergency plan on FARE. Post it in your office, the church, the gym, anywhere!

What happens during anaphylaxis?

Anaphylaxis can happen with in seconds or minutes of coming in contact with the allergen. A flood of chemicals are released into your body by your immune system that can cause you to go into shock. The blood pressure with drop, airways will narrow and normal breathing will become hard to do. Your lungs could collapse. You may start vomiting. Break out in a head to toe rash. It’s very scary. I know, I’ve watched it happen to Nathan.

All I’m asking with this one post is that you share it. Help others who aren’t in the allergy world know what to look for so they can get help. We were so lucky today that Tinleigh didn’t ingest the flour. Just seeing those hives on her face tell me ingesting it would probably have been bad. I do not blame the sweet lady in charge one bit. I should have explained Tinleigh’s situation to her better. Tinleigh probably should have just sat with me during church. I’ve learned my lesson.

Like this:

Our family

I’m the average stay at home super mom. Run the daily grind of raising two boys and two girls.

I love coffee, dancing, painting and teaching my children how to grow into the best people they can be.

All three of my oldest kids and my husband have Eosinophilic Esophagitis, multiple food and environmental allergies and the kids all have asthma. Our youngest does not have EoE but does have some strong environmental allergies and chronic urticaria. More recently the boys were also diagnosed with Elhers Danlos type 3.

Dealing with these issues daily is hard but we still LIVE life to the fullest. Nothing holds us back. We play sports, visit animal farms, go out to eat on occasion and travel. We LIVE!

I have started this blog in hopes of helping other families dealing with these issues to see the brighter side of life. Let them see they are not the only ones. By sharing how we LIVE and handle certain situations we hope others will be inspired to try to do the same.